Re: more ?'s - caught in controversy abt. IgG subclass deficiency

[Guest guest]

Anne,

We have Dr. Bonilla, he's FANTASTIC...utilize the connection if you can. He

has done wonders with my son Will (he has a complement deficiency - and his

IgG subclass 1 and 4 are low). Dr. Bonilla is a very nice and amazing

doctor. He and I correspond by email frequently and we go in for the

'necessary'

visits - like next Wed. - we have a visit to go over some genetic results and

his titer response to his Pneumo23 and a tetnus booster that were given a

little over a month ago. Will is a very complicated case because he has

several different things going on - and Dr. Bonilla has been wonderful at

prioritizing and teasing out which problem is the most important to deal with

and

which problem can wait - and he's happy to help in any way that he can.

Hope this helps...

HUGS

Stefani

(http://www.baby-gaga.com/)

(http://www.baby-gaga.com/)

[Guest guest]

AReckling@... wrote:

> Hi,

>

>I'm realizing

> that my son is caught in the middle of a controversy.

>

from dale,

Anne, I've heard this so many times and I can't emphasize enough --

your child deserves the very best we can give him. There are good

immunologists out there who will look at the entire picture and get Sam

the help he needs -- but sometimes you have to work to find them!

Please contact IDF (1-800-296-4433) and find out the names of some. Get

a consult and find out what they think. Sam deserves it and so do you!

> What's the deal with the subclasses deficiencies? Why are they not

> recognized as a problem? Is it true that if my son does show good

> antibody response to the vaccines and good total IgG, he will never get

> IVIG? Is it true that the subclass deficiencies aren't a real problem?

Okay. Let's look at the subclasses as a sports team. The major goal is

to build antibodies to all foreign invaders. Right? But, each subclass

has an assignment. Some cover one type and some cover another. I can't

ever remember which ones cover which. But if the body is missing some

or is low in some -- the other subclasses do their best to cover for it

-- and in some cases are quite successful. But, it weakens the whole

team because some subclasses are being stretched beyond their normal

assignments. But, the body is wonderfully resourceful and does a

remarkable job with being flexible. Sometimes a deficient subclass can

be covered beautifully and you never even notice that something's

missing. But in other cases, missing a subclass just leaves you wide

open and the body isn't able to cover for the hole!

Apparently, Sam's body is covering the missing areas well enough to make

antibodies to whatever was tested -- but may not be covering it well

enough to keep him healthy. That means that someone needs to look at

the clinical picture. Many doctors consider only hospitalizations when

they talk about clinical picture, some only life-threatening infections

-- but many, many, immunologists are recognizing quality of life issues

that involve just feeling bad all the time. If he was not making a

response to vaccinations -- then he would automatically be a candidate

for IVIG, but someone needs to look at quality of life issues. I

believe if you find an immunologist who sees PID patients on a regular

basis -- they will be better able to direct you and Sam as to whether

IgG would be helpful.

You said that Sam build a response to his vaccinations. But does he

keep them -- or do they fade after a few months? That's another

possibility -- some of our kids build a beautiful response -- for a

little while. So, that needs to be rechecked after 6 months or a year

to see if that protection remains.

Be sure and document every infection -- bacterial or viral. Some

doctors will tell you that IVIG doesn't help viral infections -- but it

certainly helped Katy's -- whether directly or just because she became

stronger and could fight them better. Document fatigue, muscle aches,

headaches, and illnesses. And make an appointment with someone you

trust. You'll both feel better to get another opinion.

I'm praying for you and Sam as you look at the whole picture and decide

what needs to be done. You are right to be concerned about the constant

sinus infections. Hopefully, you can get some help -- either

prophylactic antibiotics or IVIG -- but something has got to change. I

am amazed at how hard that is to accomplish in some locations. Maybe

someone here can recommend an immunologist in the Boston area (or is it

Florida -- I'm confused).

Hope that helps -- but my answer is yes -- it would be well worth the

trouble to get another opinion.

In His service,

Dale

[Guest guest]

Anne - the thing to remember is that the sinuses are covered with IgA and if

that's absent then he'll have a hard time with sinus infections even with IVIG.

Macey's been on IgG replacement for 8 yrs now and still gets sinus infections

because the IgA will never be replaced. the only infections the iVIG wards off

are the blood borne and chest. She and her dad get vicious sinus infections

that require weeks of PO and sometimes IV antibiotics. we've had no luck

getting rid of sinus infections since being on IVIG. macey also tests negative

for allergies and has no structural problems except some bone disease that has

been caused by the repeated sinus infections. Daily antibiotics seem to be our

best line of defense and then having a standby harder antibiotic when things

break through.

Ursula

[Guest guest]

Ursula ... what kind of bone disease does your daughter have? Mine has had so

many infections (as a matter-of-fact, so have I!). One more thing to be

concerned about! Argh!!!

, Mom to , 5, IgA Deficient, Chronic Ear/Sinus Infections, Asthma and

Connor, 7

>

> From: " Ursula Holleman " <uahollem1@...>

> Date: 2005/12/15 Thu PM 10:55:53 EST

> < >

> Subject: Re: more ?'s - caught in controversy abt. IgG subclass

deficiency

>

>

[Guest guest]

the thing to remember is that the sinuses are covered with IgA and if that's

absent then he'll have a hard time with sinus infections even with IVIG.

Brittany had continuous sinus infections until she was put on IVIG, now they

are rare. It took a while being on IVIG to get to this point. She has no

IGA, she uses Flonase nasal spray twice a day to keep the sinus healthy.

Janet, Mom to Brittany, CVID, age 15

[Guest guest]

>

> Ursula ... what kind of bone disease does your daughter have? Mine

has had so many infections (as a matter-of-fact, so have I!). One

more thing to be concerned about! Argh!!!

>

> , Mom to , 5,

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Blake has Severe Osteoporosis. His is cause by yrs. of inhaled & IV

steroids. He was taking Actonel once a week for it. He took it for 3

yrs. Then all of asudden our insurance & the Medicaid folks here in

SC decided he did not need to be on it. He needs to be on the IVI form

of Fosomax & then worked to teh pill form. They said he did not have

enough gain in bone mass to be on the actonel at his age. He is 13 &

a totla of 12% bone mass has been gained in 3 yrs. Even the Dr. was

hoping to see more change. Especially with puberty setting in. He has

to have a DEXA & Bone Age Scann done yrly to see what if any progress

is made.

We we were told it is common to see this in children who have spent

most of their lives on some form of systemic or inhaled steroids(such

as Blake, he has been on one form or another since the day of his

birth!!! & cancer patients with this probelm. But is is mostly known

to occur in menopausal women. You never learn of Osteoporosis in young

children until it is too late.

Another factor tath plays in Blake's poor bone mass gain is he takes 2

sub-q shots a day of Lovenox for his blood Clotting issues.

Hope this helps a little!!

(mom To Blaek 13, soon to be 14....CVID with Complete T-Cell

Dysfunction, 15 grams IVIG every 2 weeks.............other issues

occurring just too many to list right now!!!! But, He is still a

LifeTime Adventure!!!!)

[Guest guest]

Hi,

I sound like Brittany b/c my sinus infections have been significantly

reduced (not to the point of rare, unfortunately, but still less) by

the IVIG.

Anne R (IgA def, Polysaccharide Antibody Deficiency), mom to Sam (IgA

def., IgG2/IgG4 subclass def.) and Asher (mitochondrial disease, low T

cells)

Re: more ?'s - caught in controversy abt. IgG

subclass deficiency

the thing to remember is that the sinuses are covered with IgA and if

that's

absent then he'll have a hard time with sinus infections even with

IVIG.

Brittany had continuous sinus infections until she was put on IVIG,

now they

are rare. It took a while being on IVIG to get to this point. She has

no

IGA, she uses Flonase nasal spray twice a day to keep the sinus

healthy.

Janet, Mom to Brittany, CVID, age 15

[Guest guest]

Macey has indentions in her sinus bones because of the infections getting

really bad around that area. It might be that the infection ate into the

bone. I've never really questioned the ENT about it.

Ursula

[Guest guest]

In a message dated 12/15/2005 7:36:53 AM Central Standard Time,

AReckling@... writes:

> Is it true that if my son does show good

> antibody response to the vaccines and good total IgG, he will never get

> IVIG?

Anne:

Our previous ID/Immuno philosophy was with a partial PID (not full CVID),

they only treated with IVIG if you got (and survived!!) two deep-seated, deadly

infections (sepsis, meningitis, encephalitis, osteomylitis) or if standard abx

therapy never works. They didn't seem too concerned with quality of life

issues. 'Course, they were pretty cold there!

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)